Thursday, January 22, 2009

I am a receptionist at an auto body repair facility. There are 9 employees. Yesterday and today, we're short 2 employees, so I get to do things that are NOT in my JOB DESCRIPTION.

I get to wash cars (some of which are standard, bad with my left knee). I have to go get lunch for the office, which includes walking through the mall, and carrying everything back to my car.I know it doesn't sound like much, but the amount of pain involved is exceptional.

I've also decided to start myself on a high dose of Vitamin C, 500mg 4 x daily. Vitamin C aids in the production of collagen, and all the information I've found tells me that there are practically no ill effects if you take up to 2000mg per day. (Do not mistake this for medical advice, as I am in NO WAY qualified to give medical advice)

I will try to keep anyone who cares updated as to whether this helps or hinders in any way.

Tuesday, January 13, 2009

So...It's almost been a year.The last time I wrote, I only had 3 joints that needed surgery; my left shoulder, my left hip, and my left knee ( in case you are wondering, EDS effects the non-dominant side of the body more than the dominant side [don't tell anybody, my rheumatologist said it's a secret]). Now, I have those three joints, plus my right knee which require surgery.

I have also found out that my husband has Marfan syndrome.

My geneticist laughed at me.

He told me there is a chance that we may have:Normal children (25%)EDS effected children (25%)Marfan effected children (25%)EDS and Marfan effected children (25%)

And that's if I make it the necessary amount of time into my pregnancy that a baby can survive outside of the womb.

So, if I conceived and the baby was effected by both EDS and Marfan syndrome, I could potentially carry a child that would dislocate its limbs in-eutero, or come out disfigured. Since EDS and Marfan are both genetic connective tissue disorders, and they effect different genes, there is a chance that the child could "double up" on connective tissue disorders.

It's pretty scary.

If anybody out there has ever heard of a case where a person was diagnosed with both Marfan syndrome, and Ehlers-Danlos Syndrome, could you please let me know where I could find information about it?